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Advocacy in Genetics: A Teaching Guide and Workbook
A Systems Lay Advocacy
Story and Plan
Where Do We Belong?
Lay advocacy consists of informal and persuasive actions; it is often done outside of a formal system. The goal of lay advocacy seeks some type of social and/or political outcome. Systems lay advocacy efforts are most effective when done by entities organized to act with or on behalf of a group of people. These efforts strive to effect change for a group of people. AARP is an example of a systems lay advocacy entity.
Tim Welsh, Executive Director of a national multiple sclerosis advocacy agency, stared out the window of his office, deep in thought. The waning light and building traffic signaled the end of the workday, but Tim didn’t feel that he was ready to call it a day. He had received a call that morning from a Bob Stewart, seeking information and assistance with a decision whether or not to proceed with gene therapy for his young son, who had been identified to carry the recently discovered gene for multiple sclerosis. This call had given Tim’s concerns a new urgency about how his agency and its clients would cope with these new developments.
What was his agency doing to assess the immediate and long-term efficacy of gene therapy for those carrying the MS gene? What was his agency doing to ensure that genetic counselors had the most up-to-date information about gene therapy for MS? Could his agency afford to make funds available to defray the costs of this expensive intervention? Was his agency going to continue to offer its traditional programs and services for those individuals who could not or would not participate in gene therapy? These were some of the questions triggered by Bob’s call to Tim.
"Just as I had begun to think that my association was proactive in meeting the needs of people with MS, researchers on the Human Genome Project discover important new information about the genetic roots of multiple sclerosis, and our association was caught unprepared," Tim lamented. He wondered if other national organizations representing consumers were facing the same onslaught of new information. "Knowledge is power – how did we get so behind these advances in research?" he wondered.
Tim decided to organize his thoughts and decide on a course of action. "People need information," he mused. "They need information about opportunities and issues resulting from the completion of the Human Genome Project. They need information about predictive testing and gene therapy. How can we identify what information people need, and where do we find the answers to their questions? Our constituents need to know what their options are, and while the science of genetics progresses, we can provide the information to help them to make a good/better/best choice."Tim inventoried the resources of his organization that were available to help in this effort: its national network of affiliate offices, its board of directors, its consultants, its budget, its staff, its committees, all available to bring their unique perspectives and expertise to bear on this problem. The patient services departments and local affiliates could help to identify the issues people need help with, while their medical and scientific consultants and legislative affairs staff and consultants could help to answer those questions. Regional affiliates needed the national office to institute an accurate and timely information distribution system. Committees could recommend policies; the board could adopt those policies. The agency would rely on its scientific and medical consultants to supply answers, but would need to remember to examine policies, procedures, regulations, and laws that impact – either in a supportive or counter-supportive way – these medical and scientific decisions. Tim made a mental note not to forget that the agency’s volunteers could be mustered to help in this effort.Tim’s mental checklist continued. First he would need to meet with his lead staff and the executive committee of his board to solidify a plan and an approach to this challenge and opportunity. The medical/scientific consultants would need to meet, and after reaching their conclusions, they would in turn need to meet for a strategy session with the legislative affairs staff and consultants. Once consensus was reached in the national office, this information needed to be disseminated to the local affiliates, individual members, and the general public. Budget issues would have to be resolved. Tim felt better having a plan of action.Tim cautioned himself to remember that, "for every action there is an equal and opposite reaction." Public policy and the laws of physics had a lot in common. He resolved to stay focused on the big picture and be willing to compromise on issues of less importance to reach his greater goal. He knew that the concerns of his one agency and its constituency did not exist in a vacuum. That one did not need to win every battle in order to win the war was a lesson Tim had learned time and again in a career spent at the helm of various not-for-profit consumer organizations.
Three whirlwind weeks after his late-night planning session, Tim sat at his desk reviewing briefs and reports prepared by board members, committee members, staff, and consultants in response to his request. After reviewing these documents, Tim had reached the conclusion that the privacy, accessibility, and fiscal implications of the HGP findings were of such magnitude and scope that legislative action was required. Tim did not reach this conclusion lightly; he was always judicious about initiating legislative activity. He decided that the next step was to schedule a conference call with the agency’s Washington D.C.- based legislative consultants and make a second call to the association’s director of affiliate services. He then turned his thoughts to which legislators to approach to sponsor a bill. His agency had good working relationships with a number of elected officials at various levels of government. He thought first of Rep. Joe Tannenbaum, who represented an influential constituency and had been a friend to the agency in the past on matters related to research appropriations. As the uncle of a child with a genetic disease, his personal interest was virtually guaranteed. On the Senate side, Tim gave some thought to approaching Senator Diane Napp. While a fiscal conservative, her vehement opposition to unchecked growth was noteworthy. The runaway nature of the explosion of genetics information might be similar enough to unchecked growth to capture her interest. Tim opened his address book to "N."
1This is a hypothetical situation; as of March 13, 2001, no gene for multiple sclerosis has been discovered.
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